Just not myself

[beringer]

I got giant cell arthritis 18 months ago, been on aftermath 14 mos, the pain is gone but I have not felt really since. Am I the only one to feel this way? I tire out easily, just not myself. Very anxious to see if anyone else feels the same. Thanks all. Betty.

[jinasc]

Betty

Go to pmr-gca-northeast.org.uk and read up on Our Stories and all the other information on that site, including a booklet called 'Living with PMR & GCA'.

GCA is not a walk in the park and neither is taking prednisolone, which is standing between you and partial or total loss of your sight.

I can assure you, you are not alone in feeling this way.

[Celtic PMRGCAuk volunteer]

Betty, even though all your pain has gone, it doesn't mean that GCA is completely in remission and, even if it is, it can take a good year for our bodies to return to normal once the disease is in remission and we are off steroids. The fact that you are tiring easily could mean that there is still some inflammation lurking in your body so, if you are still taking a low dose of steroids, it is important to taper the remaining doses very slowly, and not at all if the fatigue is very bad.

The natural steroid (cortisol) produced by our adrenal glands when well is suppressed by the artificial steroid (Prednisolone). When we reach the low doses of Pred (around 7.5mg), this natural production has to get going again and, until it gets up to speed, we can have a shortfall of steroids in our body to cope with the daily demands we put on it. Meanwhile, we still need to give ourselves plenty of TLC, and not overdo things whilst those adrenal glands/our hormones etc get completely back to normal and, as I said at the beginning of my reply, that can take up to a year or so.

If you continue to feel unusually tired, and are someone who had raised markers of inflammation showing in their blood at diagnosis, then do ask your GP to repeat those blood tests. Also, there are other blood tests that should be carried out to check that all is well, including Vitamins D and B12, where a deficiency of either can lead to you feeling below par.

[chockybuttons]

I was diagnosed with GCA in January this year, am on 10mg at mo. Started on 15mg, improved so went down to 12 then 10 then 9, now back at 10 cos it worsened. I don't always get pains/tenderness in head, but feel odd anyhow and tired, so yes, I know how you feel. I'm 49, fortunately my doctor didn't immediately think that I couldn't have it cos not over 50, cos have read some comments where this is the case and people are not treated straight away. I sometimes forget that this is an actual illness which should not be untreated, and being on steroids, putting tablets into your body is obviously going to affect your system whatever. You are definitely not alone Take care

[piglette]

15mg starting dose seems very low for GCA it is usually at least 40-60mg.

[chockybuttons in reply to piglette]

Hi, sorry on delay. Yes, I did wonder whether 15mg low, because most other comments said they were on 30 or 40 or higher. I am type 2 diabetic so think doc is trying to balance things out, as in not worsen my diabetes.

Got blood test this friday, will be speaking to doc again nx week, have felt more drained last week or so, may well tell her that <ee>

[rapha]

15mg IS very low for GCA I was started on 40mg.....I had no vision problems. If there are vision problems then you are normally started on 60mg.

[chockybuttons in reply to rapha]

Hi, as said to piglette, I did think 15mg was low, but with the diabetes, maybe thats sometimes the norm? Do have bad eyesight anyway, but not had any other vision problems as yet <ee>

[notnice]

I was diagnosed with GCA March this year and started on 40mg preds, I am tapering down but cannot get past 25mg. I do get tired and weary when I taper down on the preds but only last a few days and I do rest up on those days.